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1094 Views 14 Replies 15 Participants Last post by  madwife
Hello, it is Connie again, I finally went back to the Arthritis doc, he said he thinks I have Mixed Connective Tissue Disease. He finally said Lupus, scleraderma, and I just started getting the Raynauds in March. I am really depressed and think I am dying, could anyone tell me how long they have had this, and can you live a long time with it. So far it is just affecting my skin, as far as my organs. No internal organ involvment yet? Thanks in advance for any advice on coping with this.
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A warm big welcome

Dear Connie

I think in time you will see it is good to have a diagnoses,so they can get you started on some medications to help you.I am not exactly sure of what mixed connective tissue disease is compared to lupus and sjogrens and raynaunds and few other.It is not a death sentence i can say.Okay at least for as much as i cunderstand anyway.I was diagnosed about five years ago but have had it for at least thirteen years or so.I have no organ damge so far either.

I want to welcome you to the sight also and let you know you are a part of one big family now and there are lots of caring people that are very supporting and if you have any questions just ask and someone will always come along and try to help you.I hope you find this place to be such a warm and supporting place as i have for four years now:).Take care

Hello again Connie,

I am really not belittling your concerns but really, I assure you, you are not dying. A lupus diagnosis or an MCTD diagnosis is a good thing because you should now get some adequate treatment. Having the issues and ignoring them is far far worse.

I presume that the doctor has started you on some medication?
Also, did you mention the feelings of not being able to cope? Depression is a very real part of these diseases and needs to be addressed just like the other issues. Are you able to talk to anyone about this? Getting some counselling might be a first step, as being diagnosed is always a roller coaster ride of emotions for anyone - me included.

Sorry if I'm repeating myself with what I had said to you before...

sending loads of gentle hugs along with healing thoughts your way,

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Dear Connie,
You have an excellent chance of doing very well with treatment.
Please remember that there is lots of outdated and pessimistic information in books and on the internet. Treatments have improved. I am a long term Lupus patient and my Daughter also has it. You will soon learn to cope, but meanwhile be gentle with yourself and please ask any questions, we would love to help you.
x Lola
:)Hi Connie, and welcome to this great site. I assure you that you need not worry. You should discuss a pain med, and an antidepressant , and "Plaquinel" with your doc.
I can assure you that there are people on this board that have lived a long and normal ,whatever normal is, lives. You are certainly not on a death sentence. You are doing one of the best things that you can do right now, and that is ask questions, as knowledge is power. We will help you all we can. You also are welcome to PM me and I will help
that way if you want. But your life is going to be ok.:rolleyes:
A DX of MTCD or LUPUS is not a death sentence!! However, having said that, it is a Chronic Illness and will affect you in some way for the rest of your life (no reason it can't be a long and fun one)!

Getting the right medication is the first step. This may take a while and some of the meds are very scary, but they are RXed becase they can and do help. Ask questions, do research (current information only - nothing over 5 years old), and listen to your body!

Getting councelling for the emotional impact is imperative, talk to someone, a therapist, a Priest, Reverend or Rabbi, your best friend, us! You need to have someone help you in learning how to begin coping, a Therapist is of course the best, as they are trained to help.

Speak to your Dr about they can help with sleep patterns, pain and depression.

Ask your Dr about treatment options, Physical Therapy, Pain Management, Medicine and anything else you can think of that will help with your quality of life!

Just remember Questions provide you with Answers! There is no stupid question except the ones you didn't ask.

Let us know how we can help!

Welcome to the family - Love Stephanie
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Hi Connie,

Getting the diagnosis can be frightening. The first things I read almost scared me to death. The information was so outdated and the list of symptoms was horrific. My emotions were up and down but I finally realized that I could cope and function with some adaptations. Twenty one years later I am still alive and kicking.

Your prognosis depends on the severity of your diseases and how you respond to treatment. You will need to become your own advocate to get the proper health care. A good support system is important too. Don't expect others to understand how you feel, they rarely do. Remember we are all here to help you.

Take care,
Hi Connie,

Welcome to the site. I can't add much to the great advice you've already gotten from others. Just glad to see you here and welcome you to the "neighborhood."

Hi Connie,
i also finally got blood results last Tuesday, my gp phoned the rheumatolist at the hospital as i hve been waiting to be located a new s the one i saw 2 mths age was just a locum.
The rheumatalogist didn't have my test results but did say it was more likely to be mctd than lupus. I still hve not taken it on board really, she advised my doc to put me on plaaquenil and told the gp she would like to see me as soon as an appointment an be arranged, might still have to wit till 12th June though.
I don't think i really will take it on board until i go back to the rheumy.
Its funny sine i started to suspect something ( i have raynauds too) i kept thinking that when i saw a rheumy they would be dimissive and say don't worry its nothing serious, now i reallydon't know what to think.
I do empathise with you but we have to stay positive and everyone else is right its a good thing to be diagnosed as atleast you can be treated properly and are not thinking you are going mad on top of being ill as no doctor is taking you seriously.
I really wish you all the best and i'm sure in time you will be able to acept things, it's quite a lot to deal with afterall but it does not mean you are going to die, lots of people on this site have been dignosed for many, many years and are still living life to the full.
All the best to you, take carexx

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Connie i cant add really anything else, i know how you must be feeling lots of us have, it is all up in thy air at first, but so glad you found us, and remember dont read things out dated please

hugs Lin xxx
Hello Connie,

A big welcome to the site where you can get a ton of information, while making friends... This is a great support site as you probably figured out with all the responses to your letter...

I can't add a whole lot to what others have said , but there is one thing I would like to tell you about.... I have a friend... she is almost eighty five years young and has has lupus since she was in her early twenty's... She is still active and living... my doctor figures I have had lupus since my teens even though I wasn't diagnosed until seven years ago... I am fifty three and feeling real good at the moment....
Take care of yourself and keep coming here and talking to people.. I am sure you will feel better... I thought the same thing when I was diagnosed, until I came here... I know better now...

Love Penny
Hi Connie,

I can't add anything, that hasn't been said, already. But, want to say Welcome and glad to meet you!

Best Wishes,
Sandy :welcome:
Hello Connie
It is highly unlikely you will die from a connective tissue disease like MCTD or lupus. More likely to die in a car crash or some other accident I'd say. It's just that getting a diagnosis of a chronic serious disease makes you more aware of mortality. With good treatment and doctoring and the right meds you will most likely improve and the disease will never progress to more serious forms. Statistically MCTD has less organ involvement than SLE. Learning to cope and adapt your life is also important. Learning to pace yourself and prioritise and getting enough rest, cutting out junk foods and eating healthily, taking some regular exercise and making time for yourself are all important strategies. As well as being very careful about sun and UV exposure even if you are not photosensitive.

If you can't stop thinking about dying it might be that you are unduly anxious which can be a disease symptom. Learning some destressing techniques can be invaluable but you might also find anti anxiety/ depressants useful for a while at least.

Make sure you have regular check ups which should include a urine test even if you are feeling fine so any hidden symptoms of worsening disease are detected.

My lupus never took a turn for the worse and I have been diagnosed well over 30 years now.
Take heart and take care of yourself.

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I've had mixed connective tissue disease for ten years now, along with Behcet's, which is another autoimmune and fibromyalgia and Type 2 diabetes. My rheumatologist says my MCTD is "mostly lupus". It is a very scary diagnosis, but not a death sentence. Keep fighting for yourself, and discuss meds and treatments with your doctor, hopefully a good rheumatologist. It certainly makes life interesting. Breathe, ok? Hugs and prayers, Jen
Hi Connie,

Just a bit of advice from a newly diagnosed Lupus patient - research and read up as much as you can on mixed connective tissue disease and Lupus. Once you have all the facts Im sure that you will feel more positive. Yes intially it can all look a bit scary but if you read further you will discover that it is by no means a death sentence.

Ive got a long way to go with learning about Lupus but have learnt so much through this site and the various links that it offers. Ive read nearly every post on this site and asked questions when I havent been able to find the answers.

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